Carl's Story so far. . . :)

On July 28th the day started just like any other day. Carl woke up for his morning feeding. We said morning prayers, read a little bit, and then got ready to go. It was time for Carl's well baby appointment. I could hardly believe that it had already been four months. And just a year ago I didn't even know I was pregnant. We get to Dr. Shah's (his pediatrician) office. What was interesting was the dark clouds in the sky. They were not in the forecast. I don't know why I was so focused on them. I just felt weird looking at them. Carl was all giggly for the nurses and the doctor. Carl weighed in at 13 lbs. 7 oz. and measured 24 in. We talked about how he was doing and I mentioned a little indent he had on his head. About a week ago I had this weird feeling something wasn't right. I couldn't place my finger on it, but it was just a feeling. On Monday the 26th I felt the indentation along the right side of his head. John and I talked about it and I decided to let the doctor know on Wednesday at his well baby. So there we are the doctor feels it then she measured his head, 17 3/4 in. I remember my heart beating faster after I read that. His previous measurement in May was 16 in. His head went from the 50th percentile to the 90th percentile. I became concerned and I knew Dr. Shah was concerned because of the diagnosis of ventriculomegaly. Time just seemed to cease to exist after this point. Right before I had just uploaded this video


In just one moment everything changed. Dr. Shah called Dr. Wheby (Carl's neurosurgeon), she wanted a CT Scan done and then wanted to see him that day. I called John at work and he met us at home. We were scared but we were trying to stay in the moment. We went to Emmanuel and Carl laid perfectly still for his CT, he was such a good boy. The techs were so amazed how well he did considering his age. The CT was done by noon and now we just had to wait. We were told we couldn't feed him anymore in case he needed to go to the OR. As soon as I heard that I knew it was serious and there was no going back.

We were called back and Dr. Wheby and Jenni (her PA) showed us his films and let us know that he would need a shunt placed in because he had hydrocephalus. Hydrocephalus implies an excessive amount of cerebrospinal fluid (CSF), within the cavities of the brain (ventricles). The excessive amount can lead to blockage which prevents the normal flows of CSF, or it can hinder the absorption.

After being told this so much overloaded my brain. Is he going to survive? What type of life will he have? Will he have it is whole life? The questions just overloaded me. But Dr. Wheby and Jenni were amazing. We got a pamphlet to read over. Instead of overloading us with information they were simple in giving answers.

Carl will have a shunt for the rest of his life but he will have a long normal life. He will be able to do what other kids can do. They recommend he doesn't participate in full contact sports like football and wrestling. But hey he is four months old I don't think he was thinking too much about that yet. There is going to be a lot of information that we will receive over the next couple of months, but the last couple of days were about action.

After the doctor saw us she scheduled his surgery for the next morning. But before we could go home he needed to get an MRI. Since the MRI takes about 30 minutes he needed to go under anesthesia, which meant no food. He was miserable! It felt like he cried for an hour straight (and let me remind you this is the same day that he had his shots) so he was not a happy camper. Click on link to see picture taken before MRI. Sad boy.

After the MRI was done we were sent home. We needed to be back the next morning, surgery was scheduled for 9:45 am. The poor little boy couldn't eat after midnight. How do you communicate to a four month old that they can't eat!? Lots of prayer went in for Carl to be okay without food. I woke him up at 1145 pm to eat one last time and we waited to the very last moment to wake him up in the morning. We got loaded up in the car and headed out.

We arrived at the hospital got checked in and headed up to his first room that he would wait in until the doctor called. Fortunately we did not have to wait alone. Aunt Pam and Uncle Mark came to join us. It meant so much to have them come. They loved on Carl, and us. They did a really good job keeping us in conversation so we weren't working ourselves into upset. So 9:45 am came and went. It turned out a 2 day old came in and needed emergency surgery, so they would take Carl as soon as Dr. Wheby called.

So now my little boy has gone almost 10 hours without eating! But he did okay. He went through his moments of being upset but we got him calmed down and he would fall asleep. Around 11am they came and took us down the OR holding area. There we met with Dr. Wheby and the anesthesiologist. I honestly cannot remember anything we discussed. All I could think about was how in a few minutes my little boy would be whisked away. I am not going to lie I was so scared that I would not see him again. At 1130 they came and took him back. We went to the waiting room and waited. . .

While we waited we talked about anything and everything. I did not look at the clock. I think it was about an hour when Dr. Wheby came out and let me know the shunt was in and everything went great!!! Now it was all about waiting some more before I could go back to recovery. Which I was able to do after about 30 minutes. When I got to see him I was taken back by what I saw. His poor little head on the right side was swollen. But he was sleeping so peacefully. We got up to the room and I got to hold him! It felt so great to finally hold him.

We spent the night in the hospital. He got upset now and again but for the most part he did okay. The rest of the day he was out of it and a little bit sick. The next morning he had to get another CT. Later Jenni came and saw him and gave him the okay to go home as long as he could keep feedings down. So after a few more hours we were released.

When we got home I had John blow up the airbed and we camped out in the living room all weekend. I will be honest the night we came home I just cried. For the last two days I was scared and worried and did my best to keep it together. So when we were home and the exhaustion set in I just bawled. But in my tears there was joy. Joy for the Lord who had and always will be watching over us. I know God has been watching over us through everything and will continue to watch over us. Jeremiah 29:11 NIV: For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

That is a promise I will hold dear and true.